I Am Not An Anecdote

Whenever enemies of breast density awareness are faced with stories of women who have been harmed by lack of density notification, there are two words they reach for to discredit us. One of them is the hot button word "emotional." 

Leslie Moran, representing New York Health Plan Association (NYHPA) pulls it out here (fast fwd to 21:52)

 "Breast cancer is a very emotional issue. No one can deny that. But I think when legislating how things are covered we need to be able to put some of the emotion aside."

Notice the subtle straw man insertion "no one can deny that." Why, who would deny that a late-stage cancer survivor would be very emotional? Presto. I'm automatically discredited as a credible voice in this argument just because I have breast cancer. As if it's bad enough having a disease, suddenly anything I say is suspect. Because even I can't deny that having breast cancer is an emotional experience.

(What's funny about all this is that opponents of this bill are not exactly a bunch of Mr. Spocks. See  this three-page brawl debate with radiologists  in a radiology forum; registration required to view. One radiologist even called us "breast density nazis.")

But watch out, opponents of breast density notification, because when I and the other density advocates get emotional, this is what we look like:

(Image from Tumblr.)

The fact is that my film mammogram had only a 40% chance of detecting my breast cancer. To quote Ms. Moran, no one can deny that.

Another buzzword opponents of breast density notification keep handy is the word "anecdotal." Leslie Moran deploys both emotional and anecdotal in one sentence later in the same clip (fast forward to 22:39):

"We need to make sure that when we are talking about coverage of medical treatments that it makes the best medical sense, not the best legislative or emotional anecdotal sense."

 I almost feel sorry for Ms. Moran, because part of her job is to go on television and sound like a tool, and that can't be fun.

And to be fair, Moran was winging it. This legislation was barely on the insurance lobby's radar screen; they were counting on radiologists (ACR) and gynecologists (ACOG) to do the heavy lifting and kill it in committee, and suddenly the media drags the insurance lobby in for comment. They didn't have a prepared statement, so of course they hid behind ACOG's skirt letter of opposition, and then tap danced a little. Halfway through Moran's sentence she realizes she is not making sense at all (what could be wrong with a piece of legislation making legislative sense?) And that's when she pulls out the two-for-one, "emotional anecdotal."

A word about "anecdotal." It justifiably has a bad name in science but it's misapplied in this case. An anecdote is a dubious substitute for evidence, as in "I know a woman who ate twelve goji berries a day and her cancer disappeared."

But I am not an anecdote. 40,000 to 45,000 women in the US receive false negatives on mammograms every year (American Cancer Society). I'm just one example.  It's estimated that 10,000 women lose their lives every year from breast cancers that could have been treated at an earlier stage.

That's a lot of anecdotes.
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But Ms. Moran has already won; the requirement for insurance coverage for additional screening was stripped from the bill last week despite documentation of a denial in coverage for a screening sonogram. Shame. However, the bill survives in its amputated form, and once the bill passes we can track whether insurers cover screening sonograms, and then come back to Albany and correct this if necessary. It's not ideal, but what's important is getting the notification bill across the finish line this month.

If it's any consolation, the bill now has one less deep-pocketed enemy.

I've heard that language has been tweaked in the bill to mollify Assembly Health Committee Chair Gottfried's concerns (without diluting the bill) so my fingers are crossed that the bill (now called S6769A/A9586C to reflect amendments) will get out of Gottfried's committee and onto the floor for a vote.